You Can’t Tell Me What To Do!

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I really don’t get the chance to interact with many people. It’s a huge effort for me. But your husband and kids! People exclaim. I see my kids when they drop off food, they are teens! Introverts at that. My husband arrives home from work around 7:30 and must take care of homework and lunches and clean up, so he rolls into bed around 9:00. I have an hour or so, if I managed to stay awake.

So, when I get to speak with a new person it’s pretty exciting! Unfortunately, though, some people (though their heart is in the right place, I’m sure, wanting to help) start in with the “You know what you need to do…” and it’s very rarely helpful. Now, of course I am not dismissing carefully considered suggestions, I’m not unilateral in this! What I’m talking about are the questions that could be better phrased as why questions. The ‘You need to find a new doctor’ ‘you need a housekeeper’ ‘the waiting list for neurologists is six years’  these types of unhelpful comments.

It would also be nice to be asked how I’m feeling, but we might all be pretending everything is fine.

I’m still lying here in the semi-darkness, grumbling most of the time. I feel like my life is flying by. I’ve been lying here for a year. I’m gaining weight back because I can’t move. I am having huge gastro problems. I’m so tired today, I can barely move. I’m not sleeping properly, pain is waking me up. My joints are so weak and painful I can barely do anything. I am so angry at being ignored. How much more of my life am I going to spend lying here?  I can do NOTHING right now. Even watching television is a struggle as the light and noise can only last so long.

I did buy a cervical pillow from Wal-Mart, it’s very nice. It’ helping my neck pain. I lie on it at first, after being propped up a bit and my neck hurts so much, but the next day it feels good. Less pain than usual.

I feel like if I could have a good stretch I’d be better. Momentarily, anyway…

 

After the awful van attack in Toronto,  one of the victims’ spiritual leader said she had so many loyal and beloved friends because she was a good person.  *Well* it’s really good to know where I stand. 🤔 Perhaps I should stick to Christianity over Buddhism, as it lauds suffering. 😄(Emotionally self-inflicted counts 😜).

Ugh, just occurred to me, my throat kind of hurts – I get really angsty and grouchy when getting sick. (Started to get that way around age 35. Awful.) At least it doesn’t take weeks to get over anymore.

Time for more rest.

Lies I’ve Been Told…

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“Looks aren’t that important in life, it’s what’s inside a person that matters.” …

“I am your friend,”…

“That looks great on you!” …

“You’ll regret it!” …

“I’ll never tell anyone, I swear!” …

“You can count on me!”…

“This medication is non-addictive.”…

“I would never lie to you,”…

“I love you!” countless…

“If you lose weight you’ll feel better!” x infinity…

“Your doctor will call you back in three days…”.

“Your doctor will call you on Tuesday.”.

(Sigh)

Now, to be fair, it seems the clinic is moving floors. It essentially broke down earlier this year (at last check, admittedly a bit ago, only complaint with my doctor who ran clinic is about paperwork. Will keep you posted. Must have hubby do checking am too weak),  and it seems to have merged with another pain management service. My new doctor, who was only in this clinic once a week anyway, has not been in, due to the chaos. I have confirmed the scan is on my file. Now, I don’t even know if the doctor to administer the blood patch is still on staff. I caught a quick article up online for only a couple of hours that stated there are no doctors in my home city to treat chiari if it turns out to be. I will burn that bridge when I get to it, but I am pretty miserable here. I essentially lie in the dark most of the time. The straighter my neck the better. My vision is very bad. My tablet is turned way down, as is the tv. Very dark. I can’t stand noise. So it’s not always watchable or useable in the tablets case. Last week was great- I could sit horizontally and play with makeup for a little bit! Have a rest. Organize some items I had tossed aside when feeling terribler. So much better than lying on my side in the dark. I have incredible trouble sleeping, so I stare into black space for hours. It can be awful. And the facial pain. Ay-yi. And the back pain so bad you almost faint, but you don’t.  Because you’re home alone. On really good days I get to sit up for a while before the pain starts, the nausea and dizzy take over. On really really good days you can turn on a lamp.

The EDS Clinic said I could be in to the pain clinic there by the end of June, so hope oozes from every pore! No, I am grateful as I’ve been inappropriately medicated for a long time. I would like to sleep, maybe? Once a week? My former pain doctor had been planning to change my plans for medication for a while, as he suspected I might be causing myself pain with what I am on. (Apparently it’s a thing) Plus it has been a year since I have had proper migraine shots, so dealing with intermittent migraines, too. Fun! 😄

Oh, and a lady from Chiari Canada has been so lovely and supportive in corresponding with me, even though she is so busy. I appreciate it so much.

My rugrats gave me their flu or cold or whatever… I am not amused. I shall take my whiny butt back under the blanket.

I shall let you know.

 

 

Current Mood: Exasperated

Over the weekend, I managed to get a lot of rest in and my abdominal pain is resolving. This makes me question the cyst

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Current Mood in Action

theory, although, I did have a major bout of nausea last night, which is what I was looking for. It just sseems very short. These used to last a week or so, and this was a good two to three days shorter. Now, I haven’t had one in a few years. I am getting older, that may be a factor. My Mom was 11 years older before menopause really started, she said, so I guess it’s time for peri-menopause at the least. I should likely have my hormones checked. I’m interested in what my thyroid is doing. I’m pretty sure my GP has his eye on it. This is the major problem with having illnesses. Routine, important maintenance gets pushed to the side, often with the assumption ‘someone else’ is looking after it. I have so many things I’m chasing right now it isn’t funny!

 

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Not all, of course! Ha!

Anyway, my ovary whatever seems to have resolved itself, so I’m not being attacked from the inside, but my abdominal muscles, the whole of my abdomen feels like it was removed. Remember that doll, Skipper, that was pregnant? You could take her abdomen off? That part is burning fiercely.

It feels like someone has taken a blowtorch and actually removed that part of my stomach. I have no idea why. The surgeries I’ve had in the area are gallbladder and appendix, are they enough to cause that pain? Oh and two c-sections.

Once again, I’m back to eight days from my shots. Botox for migraines and EDS. So my back is aching. My low level

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Chris O’Dowd looks so much like my husband. Back in the day. He’s neater now. 😄

headache is ramping up, and my neck is really sore. I’m back to the nausea and headache and dizziness problems I had before. When I was in so much pain and couldn’t move, I wasn’t thinking about how ill I felt. Now that I’m on less medication and am upright and have peeled away a layer of pain I can feel it. The problem is, it’s not bad enough to be debilitating,  but it sure is bad enough to make me grouchy. I’m trying to be kind, but I don’t like myself on days like this. 😦 I’m watching some comedy and staying isolated to try to help.

Almost there!

It’s supposed to rain off and on this week, and that never helps. I’m going to play with some Maybelline makeup  #igotitfree through @chickadvisor. Pretty awesome. Then, a nap!

I am not going to have the strength to talk to people I think. I won’t be able to censor myself. I snapped at my son yesterday for no reason. It’s not fair. I’m too worn out. I’m trying to catch up on blogs, but it’s all I can do to press like sometimes. I don’t get there, some days.

No, wait. I did have a reason to snap at my son. But it still wasnt fair. I asked him not to come into my area while I was trying to fix a problem and he did anyway because he is autistic, and I am in pain but trying anyway. I made a mistake and apologized. He made a mistake and apologized. Better.

Okay. Need to conserve spoons.

Stay strong, Zebra pals! 😘

Some Thoughts Before My Head Implodes

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I do have some good news! The EDS clinic called yesterday. They wanted my GP’s information so he can be contacted for more information. At least they’ve heard of me! My husband called back, as I didn’t get the call.

My head wasn’t as bad this morning when I woke up, but the pain progressed as time has. It’s been two and a half hours and I can feel it settling in nicely. My husband did get a response from my doctor, and apparently whoever answered the call said there is no way it could be chiari malformation because it would have shown up on my barium swallow (?) I really wish he hadn’t said anything about my fears. I also have a skull fracture at the back of my head that may be affecting things. It’s been raining here all week, is sunny today, and is supposed to rain again tomorrow to Sunday. I thought that had something to do with it, but I’m hurting again today, so that doesn’t seem right.

I thought I’d blog early before the emotions and pain get too tangled.

I know I sound like an asshole much of the time. You’re getting real, unvarnished here. What I usually hide. What I find so challenging is, I should be falling back on the friendships I made years ago. But I didn’t make those. I’ve explained my weird adulthood before. Moving across the country, my ex-husband alienating any friends I did have, working too hard and making poor friend choices led to those relationships falling apart. Finding a group as an adult and being drummed out because I was accused of being a drug abuser (I wasn’t, someone decided an increased prescription dose = me freely taking as many pills as I want. I don’t talk quite as much as I used to, but that was a side effect of that stupid medication as well.) A couple of long – term friends, but they are spoonie, too. We rarely see each other or even talk. But they are really good people.

Some of the friends I did have don’t know what to do with me now that I can’t go out. They don’t even invite me over when they have movie nights at home. I could do those. I don’t even hear from them. Not even casual emails. It’s as if I ceased to exist.

My Mom tries so hard, bless her, but I need a Mom.

My husband is so busy looking after me, I rarely see him.

I really try to be a fun, happy person most of the time. I wonder if these episodes are just too intense for some people. It’s just right now I need friends most of all, just knowing someone cares means a lot to me. I’m probably looking in the wrong place or asking for the wrong things.

I just find so many are suspicious or angry or defensive, you cannot approach anyone. It’s harsh out there, and in all honesty, I’m getting tired. I’m getting tired of having my head bitten off when I ask for help. I’m tired of having it bitten off when I offer help.

A friend of mine, a friend I went to elementary school with, is a nurse. She is one of the most caring people I know. She wrote on her Facebook wall “I must be the first person in the history of the world to cancel a doctor appointment because of not feeling well.” Now, I don’t demand everyone think about me before they post something, but that hurt, it was so tone deaf and out of character. I mean, I’ll live, but…

Okay, the head is hurting time to vape. Nausea is rising.

Have a great day, Zebras! 😘

Later that day…

I’m feeling a bit better after a nap, but I am still in a lot of pain. My eyes are really sensitive to light. My flipping teeth hurt.

I am feeling really isolated and alone. Facebook is just nasty lately. Not personally, but it’s so negative. You can’t express a point of view without being slammed with the other point of view. And if you differ? Good bloody luck to you! Yikes! I’m done.

I don’t have the support I was searching for. I really don’t know what I’m doing wrong. I don’t know what makes me so unlikeable. I try really really hard, but I’m always that person on the sidelines. I don’t mean to sound melodramatic. I remember one of our extended group had cancer, and such a fuss! People sent her care packages and knit her hats… I don’t want things… but an email? That would be cool. And not from my mom tied with obligation. My mom tries to be there, but she follows me everywhere on social media, not understanding it feels like a burden.

I feel like deleting everyone but me on Facebook and keeping the memories of all the funny stuff my kids did.

It’s really dark in here, and not just because the lights are off.

 

On the plus side, I’m covered in melted chocolate and popcorn. I get cravings with the migraine. Probably not the best for it, but at least I went down swinging.

 

UPDATE: I  took my medication and I just wanted to clarify a couple of things.

I want my mom to be my mom and my friends to be my friends. It’s not that I don’t love my mom, it’s just not her role, she needs to be in her place. I can’t have her out of place, it’s too much for me to cope with. I could be babbling at this point..

I am not sitting back and waiting for people to call me, usually. Now, I am, as I’m incoherent. In the past I didn’t.  Also, now, I’m just not sure I’m much an asset. Be my friend! I will whine about my pain and pass out! ( attempt at humour) though there are those who are silently there, I know.

I think maybe I’m just a mess at the moment. 😄🍫🍿